The Pile

A rare photo of my table completely cleared of its usual piles...except for the cat.

I can't shake it. It's always there. Every day, every week, every season of the year...

There's a pile on my dining room table.

The contents of the pile change periodically. But they always indicate a current "focus" of my life.

It might be a pile of Christmas cards with envelopes to address, or it might be the pile of thank-you cards that quickly follow behind.

I just emptied the table of the pile of tax forms only to be replaced by the highly anticipated "intent to homeschool" paperwork.

Sometimes the piles bring sadness, like when I have to fill out documents demonstrating our life with rare disease. But woven into those same sad piles are the jubilation of saying: "Oh my goodness, look how far we have come."

There are a multitude of random school supplies within the piles. Three-ring binders hold my Bible studies and prayer journals, post-it notes contain scribbles of assembly and senate bills that I am following, 3 or 5 subject notebooks with sections for blogging-for planning-for checklists, and pens and pencils that inevitably leap out of our junk drawer and make a home on the table...they represent the stock-piling of years of school supplies being purchased that we never really used because Evie's school supply list was different than the other kids.

I have to shift the piles to an alternate location when we have guests, and I usually re-evaluate my piling compulsion each time that happens. But, I've grown accustomed to it, and realize now that it's not a sign of incompetence or laziness-this is my filing system, this is how I get things done, this IS how I "do what I do."

Do YOU have piles in your life? Do they help you or hinder you? 

I Despise that Word...

Our girl DJing with Jeff on the K-Love Afternoon Show

***Be advised that this post contains spoilers for both the book and movie referenced within***

I was pleasantly surprised when my Washoe County Library suggested Flowers for Algernon (Daniel Keyes, 1958) for me on my Overdrive app. I thought it would be a "blast from the past." Originally, I read "the book" in an abridged version in 8th grade. I didn't realize it was abridged until I checked out the book 15 days ago and started reading it again for the first time since 1988.

I recalled the story as being similar to the movie Awakenings (1990), with Robert De Niro and Robin Williams. In both plots we find a man who has intellectual delays and is chosen for an experiment to increase his intelligence. I recalled both stories also resulted in success of the experiment for a brief time, but also coming to a tragic end as you watch the protagonist regress back into his original pre-experiment state.

Fast forward to my current life...I have a child with special needs which include blindness,  and intellectual delays. I have been through numerous trainings on self-determination and advocacy for those with disabilities. I am also keenly aware that there are some people in our lives...in our communities...in our world, who still believe those with a lower IQ are not actually human beings with thoughts, feelings, or rights.

Flowers for Algernon has given me the perfect narrative for why I despise the word "retarded" (I would love to from here on refer to it as "the R word" but I know I had to spell it out in order for those who read this to be on the same page with me.)

You see, people use the word ALL THE TIME to describe things that are weird, bad, messed up, or displeasing. It is NEVER used in a positive manner. NEVER. People also like to use it as a hybrid of words to accuse or lash out at others "f*@K-tard" or "beau-*@rd" are often references I see used on social media. Again, the word is being used to hurt, to assault, to harm. I was even disappointed when I read the book Wonder and saw that the protagonist in that story who had a physical deformity was concerned with convincing others that he wasn't "re*@#ded." He was hurt by being called THAT word and wanted to ensure that people knew he did NOT have an intellectual disability.

Not so long ago, a person like my beautiful daughter would have been put into an institution for being diagnosed as the "R" word. It was a CLINICAL diagnosis. It was a medical term. It was a condition which brought shame, fear, and the certainty of a life shut away from society. In Flowers for Algernon, as Charlie gains his intelligence and recalls memories from his childhood, he starts to realize that he was never actually seen as a human being. The doctors who helped "make him" claimed that he wasn't a human being until they made him so, until they increased his intelligence.

When Charlie realizes that he's regressing, and he begins to understand where this decline is leading, he asks to go to the institution where he will be placed once he no longer has his higher IQ. And this is what Charlie writes in his journal:

As I drove out of Warren, I didn't know what to think. The feeling of cold grayness was everywhere around me--a sense of resignation. There had been no talk of rehabilitation, of cure, of someday sending these people out into the world again. No one had spoken of hope. The feeling was of living death--or worse, of never having been fully alive and knowing. Souls withered from the beginning, and doomed to stare into the time and space of every day. (Keyes, 1958)

So, why do I despise the "R" word so much? 

Because the "R" word is a remnant of a time in our history when it was okay to send off those with intellectual disabilities to wither away in a facility so none of us had to watch.

I despise the "R" word because it is an unfortunate representation of our current life, when people who have disabilities are viewed as "less," as "flawed," as a mistake. Somehow, we still live in an age when we think it's justified and within OUR rights to end a pregnancy because we think the baby might be born with a disability. We still live in a time where we pick on the kids with special needs in school because we need SOMEONE to pick on, and they won't really understand that we are making fun of them anyway.

I despise the "R" word because, even when you say, "but I would never describe your daughter that way" you are still describing SOMETHING that way...and it's never a kind description, it's always a description of loathing.

I must admit, I haven't enjoyed this little stroll down memory lane the way I thought I was going to. It has been a painful read for me, and I understand now why we read the abridged version in 1988...but I don't think it was a "coincidence" that I had this book suggested to me at this time. I had some things I needed to say, and I guess this gave me a launchpad for doing so. 

Don't Cry Over Spilled Skinny Chai Tea Latte

Evie rings the Bell at the BELL Academy after Telling her Friends about an Accomplishment of Hers

We left the BELL Academy,

(Six hours of braille mixed with play),

Drove down the highway;  off to speech!-

It was a "special needs" kind of day.

"I think we'll get there early," I say, 

Because no traffic did we find...

"So at Starbucks we will pitstop, 

A skinny chai tea latte, I won't mind."

We swiftly grab my order, 

I smile and take a deep cleansing breath,

"Ev, we're still getting there early,"

A relaxed feeling that I rarely get.

I imagined slowly sipping 

My skinny chai tea latte in the waiting room,

I had been waiting for this priceless moment 

Since I woke this morning, now it was SOON!

Excitedly we pulled all

Our belongs from the car,

In the door and there's Ms. Vicki - 

My skinny chai tea latte moment wasn't far.

Evie hoisted her proud new BELL bag

Over her shoulder while standing up,

And that pesky cinch sac swung too wide and

Assaulted my Starbucks cup!

The wise green mermaid didn't cry,

As she bounced upon the floor, 

But I yelled, "No!" and fought back tears, 

My skinny chai tea latte was now no more.

I felt frustration fiercely beating

At the doors behind my eyes,

I knew my emotions were just selfish,

"Tammie, do NOT let yourself cry."

My daughter couldn't help it, 

And she today had her OWN fill,

Of the constant call of courage 

As she fought her OWN dragons...

but still...

This momma was already feeling worn,

Today she felt under attack,

So a spilled skinny chai tea latte,

Was the straw that broke this momma's back.

This poem is dedicated to all my fellow parents who have cried over what SEEMS to be the silliest thing...

My Beautiful Feet ~ Guest Blogging Day

Image courtesy of Sura Nualpradid/www.freedigitalphotos.net

And how are they to preach unless they are sent? 

As it is written, “How beautiful are the feet of those 

who preach the good news!"

 Romans 10:15 ESV

Paul is quoting from Isaiah when he writes to the Romans about the beautiful feet of those who bring good news.  I had never really been "caught up" in this verse before, but a pastor at our church referenced it a couple of weekends ago, and I was on worship team that weekend, so I heard it four different times and it snuck deep inside my heart.

• I want to be beautiful.  
• I want to have an impact.
• I want to change the world. 

But, how can I do that as and still be a wife, daughter, mother (of a child with special needs) and substitute teacher?  I'm a sister, cousin, and friend.  

How can I do it all?

Continue reading on Comfort in the Midst of Chaos...

A Good Punch in the Face

Image courtesy of num_skyman/www.freedigitalphotos.net

I've never punched anyone in the face...

Let's get that clear right now.  

But I've wanted to.  In those very "Ally McBeal" moments when you picture yourself following through on your basic animal instincts to lash out at anyone near you when you are injured or threatened...oh, yes...I have wanted to punch many people in the face.

the 8th grade classmate who said, "Tammie, the only reason you get good grades is because you don't have any friends".

the 8th grade classmate who wrote me a note saying that she wanted to become popular that year, and that meant she couldn't be friends with me anymore.  (yeah, 8th grade sucked).

the people who typed the anonymous letters from graduate schools and turned me down because of my GRE scores (although I'm glad you did because I never would have started dating my husband had you accepted me at THOSE schools).

everyone who worked at the Gerber Grow-Up plan because I got a letter from you in December 2004 saying that our daughter couldn't get life insurance through you...(hmmm...a rare disease does that, I guess...hence, why you were forthwith known as the Gerber THROW UP plan).

a couple of Wisconsin's 'civil servants' whose names appeared on letters declining Evie for some county services.  That was unfortunate...but, the courts overturned your decision. :P

the parents who shush their children when they ask me very logical and appropriate "children type" questions about Evie.  Your SHUSH communicates shame...and there is no shame about my daughter.  Your SHUSH is what makes her question what IS SO wrong.

the lady at McDonald's who approached me as we frantically were trying to usher Evie out of the restaurant during a wicked meltdown after a long day of traveling....you approach me and all you do is suggest fish oil for my child's behaviors?  Open the friggin' door for us and help us OUT!

the old man who told me I should have folded up Evie's white cane BEFORE boarding the plane because it was a nuisance for him.  Clearly you don't understand WHY we use a white cane...it's HOW we GET on the plane.

the eye doctors who have treated Evie as if she has no intelligence and that we shouldn't even be in your office...well, guess what...we aren't in your office anymore.  It's actually worth flying back to Wisconsin to see our eye doctor THERE, 1,800 miles from home; than drive two hours and waste our time on you.

I didn't have to, and don't have to, punch any of these people in the face.  They are of no consequence to us.  

This is a great big world, and we serve a GREAT BIG GOD and because of His victory WE have victory.

Today.

No punching required.

Written in response to writing prompt 182 on thewriteprompts.com 

"Come on, God! Let me Worship in Peace!" ~ Guest Blogging Day

God is spirit, and his worshipers must worship in the Spirit and in truth.” John 4:24 NIV 

I found myself in unfamiliar waters on Saturday of last week.  We had tickets to see Chris Tomlin's Worship Night in America here in Reno and we had been looking forward to it for MONTHS!

However, after a sleepless night with one of my elderly cats who was having...eh-hem...intestinal issues, and a long day of watching BOTH my cats refuse food; my husband also wound up on crutches with a chronic foot injury, and I was looking at my jam-packed schedule trying to determine when I'd carve out time to get my cats to the vet (hoping it would NOT be to put a cat to sleep!).

I was pretty ticked off with the whole world...

Continue reading on Comfort in the Midst of Chaos... 

Fight Night ~ The Battle with Braille

Ladies and gentlemen, welcome to The Ring! Tonight we will see the anticipated match-up of Hefty verses Braille.  This highly anticipated fight is brought to you after years of training, and lots of education, sweat and tears.  The opponents are in their corners and reading to come out swinging; so get ready for an exciting battle.

Bong!  Round 1:  

I heard it first at the Parents of Visually Impaired Pre-Schoolers conference, "Start Braille early."  It will be a challenge, but we need Braille in our arsenal of weapons as our child is at risk of losing her vision.  

Jab, jab...

No problem.  We have a great system and are already learning tactile discrimination in our home visits from the Vision Specialist.

Thwack...

Easy peasy.  

Floored.

Better get some water...I'm already sweating.

Bong!   Round 2:  

Oh, yeah.  We are rocking you, Braille!  I'm even using sidewalk chalk to make Braille cells in our driveway and having our daughter jump to different letters to show-off her awesome memorization of the Braille code! 

Jab, upper-cut...

Another new TVI this year?  Hmmm...it's tough to learn when the teacher isn't the same each year...

Wait!  It's October now and our daughter hasn't had any Braille services yet this school year?

Ooof!  Stars burst in front of my eyes.  I shake the cobwebs from my head.

It's okay.  It's okay.  Just got a phone call and the district finally found a teacher.  Her services will start soon again and we'll be caught up.

Saved by the bell.

I need to towel off...the sweat is running into my eyes and I can hardly see straight.  That punch landed right where it hurt!

Bong!  Round 3:  

So, 90 minutes of Braille instruction a week...and it's hard to spread them out because the teachers are pulled to so many schools and over-worked and hard to find, so we're doing ALL 90 minutes at once. How many 6 year olds can stay focused for 90 minutes on BRAILLE?  

Ouch!  It feels like my nose just exploded.  How did I not see that coming?

BUT at least we're getting services, right?  I should be happy about that.  Grateful.

End of the school year...saved by the bell again.

I stumble to my corner and sit wearily on my stool.  This Braille is a tough opponent.  I need to build my strategy better.

Bong!  Round 4:

Yeah...that's right.  I'm coming for you Braille.  I'm taking a class on-line so I can learn all about you and THEN we'll see who will knock out WHOM!  

Got my own slate and stylus.  Look at me!  I know my stuff!  I'm at the head of the class.  Now I can help my daughter with her homework and we will be FINE!

Jab, cross, upper-cut.

Boom.  Floored ya, Braille.  

How you like momma now?

I strut over to my corner; don't even need to sit down, I'm on FIRE!!!

Bong!  Round 5:  

There's my girl...she's getting 30 minutes A DAY of Braille.  She still can't read it with her fingers very well, but she's learning the code like a champ!  We're Brailling her class Valentines and she's loving it.  

Speed Bag...look at us now!

Jab, jab....Jib-Jab!

Hmmm...you're surprisingly strong, my opponent...and we're caught in a CLINCH.  

The ref calls it, and we hear the bell.

Bong!  Round 6:

New state, new rules.  They "suggest" a school for our daughter that has more students who are learning Braille.  I say, "No.  She's already made friends here, she's already bonded to her teachers.  We just moved her half way across the country.  No way.  That's not inclusion." 

Okay then...30 minutes of Braille a week.  Wait, a WEEK?  Well, ummmm...okay....I guess we'll just work harder at home.

Jab.

Would that type of instruction be acceptable for learning to read print?

Bam!

Would that amount of time be okay regarding any other GENERAL education requirement?

Thwack, wam!

Now we've moved it to 60 minutes every OTHER week?  

SLAM!!!!

"She's behind.  She's not learning it.  She's not practicing."  

I'm dizzy.  I'm stumbling.  I can't form the words that I need to express how I'm feeling.

Saved (?) by the bell....

I crawl to my corner.  I'm on the floor with my arm draped on the ropes.  My coach is pouring water into my mouth and it runs down my chin and bleeds onto my top.  

I should have fought harder.  I should not have caved so quickly three years ago.  But now it's been three years, and the pattern has been established.  NOW, she's having to do so much to stay on top of her other classwork that I don't blame her for not wanting to work on this.  Why WOULD she prioritize learning something for a teacher she only sees two times a month at most?

I should have trained harder.  I know how to advocate.  But, when I'm fighting SO many battles for things like medicaid and good doctors, then some of the battles get written off as "the least of my concerns for now."  

A parent responds to my call for help from an on-line support group, "Of course they moved her to 30 minutes a week because no one can learn anything in that time, and eventually you'll stop trying, and THEY can stop teaching it."  

Another parent says their child had 60 minutes a day at my daughter's age...another says 90 minutes a day.  A DAY!

"Don't give up on Braille...you can't use technology when the power goes out."

Yes, yes...all so true.  And all adding to the cacophony in my brain.

How many times did I get hit?  Can I stand up again?  I really just want to close my eyes and go to sleep.

Bong!  Round 7 is about to begin...and I'm spent.

When a Friend Speaks the Truth ~ Guest Blogging Day

Kathryn with Evie

Many are the plans in a person's heart,

but it is the Lord's purpose that prevails.

Proverbs 19:21 NIV

I was driving home from the hospital with my baby girl in the car.  My heart was racing and my blood pressure was high.  How could God do this to us?  Just when we had reached the finish-line of chemo...boom, another punch in the gut.

I dialed my friend Kathryn and she answered.

"Can you believe it, Kathryn?  We just finished chemo and now she has pneumonia?  Oh my gosh, are you kidding me?"  I say in response to her, "Hello".

"Tammie Jo," she replied, "This is your life...stop waiting for it to change."

Continue reading on Comfort in the Midst of Chaos...

Preparing for the Flood ~ Guest Blogging Day

Mount Rose in Reno Nevada

Trust in the Lord forever, 

for the Lord, the Lord himself, 

is the Rock eternal.  

Isaiah 26:4 NIV

Last week my family arrived back home to Nevada from our vacation in Florida with just enough time to make a run to the grocery store for food and supplies before the torrential rains hit Northern Nevada and California.  On our first week "back to school" after winter break, our first day was cancelled, the following two days consisted of late starts due to closed roads which had flooded and high schools being turned into shelters for evacuees, and icy roads as the temperatures were dropping and still more precipitation was falling.  School was again cancelled on Thursday and we had another delayed start on Friday.

Continue reading on Comfort in the Midst of Chaos...

Why it's HUMANLY Impossible to be the Parent of a Child with Special Needs ~ Guest Blogging Day

"See now that I myself am he!

There is no god besides me. 

I put to death and I bring to life, 

I have wounded and I will heal,

and no one can deliver out of my hand."

Deuteronomy 32:39, NIV

I can't do this.

I wish I could run away.

I am FAILING at this.

I give up.

I have thought these thoughts before, and perhaps I may again, and it's only through the grace of God that I can get up each morning and muster the energy to make the coffee, shower, smile and go bravely into a brand new day.

I do this for my daughter, my husband and my God.

I do this because I KNOW for a FACT that I AM A WINNER...and I'm ONLY a winner because Jesus Christ died for me and conquered the grave.

BUT WAIT! Let's take a step back.

Why is my life so hard that I may have thought the thoughts that I listed above?

Continue reading on Comfort in the Midst of Chaos...

SMART Goals for Salvation ~ Guest Blogging Day

Image Courtesy of stockimages/freedigitalphotos.net

Therefore, there is now no condemnation for 

those who are in Christ Jesus. 

Romans 8:1 NIV

As parents of children with special needs, we will often become familiar with the acronyms for so many educational "catch-phrases" or fads. One that I've been looking at lately: SMART Goals. While the term is attributed to a 1980's business writer, it's often also used in education to teach students how to set goals, both short and long term.

Here's how SMART works. When you're setting a goal, you want it to be:

S: Specific
M: Measurable
A: Attainable
R: Relevant
T: Timely

Okay. This looks great when you're talking about a goal like finishing a paper for a class, or losing weight by a certain point in time. But, what about our biggest goal? What about that ultimate goal we know is waiting for us at the end of our life?

Heaven.

How do we set the right goals in order to get to Heaven? What do we need to do?

Continue reading on Comfort in the Midst of Chaos...

The Top Four Phrases I Stole from Jesus ~ Guest Blogging Day

Image Courtesy of pat138241/freedigitalphotos.net

As a parent of a child with special needs, I have found that many times I can relate so clearly to many of the emotions that Jesus experienced as he walked the earth in the form of a man.  

The fear, the pain, the rejection...so many things that you would never think GOD would experience; and yet, he did, so he CAN truly relate to us in many of our raw and brutal emotions.  

The following are my top four phrases which Christ himself uttered 2,000 years ago; long before I ever did.  And yet, it brings me so much comfort to know that "he gets it."

Continue reading on Comfort in the Midst of Chaos...

What I Learned at the Water's Edge ~ Guest Blogging Day

Then behold, men brought on a bed a man who was paralyzed, whom they sought to bring in a lay before Him. And when they could not find how they might bring him in, because of the crowd, they went up on the housetop and let him down with his bed through the tiling into the midst before Jesus. When He saw their faith, He said to him, "Man, your sins are forgiven you."

Luke 5:18-20 NKJV

The Child: I shuffle along, kicking up the dry mountain dust, coating my tennis ball in a thick clay-like film. My white cane hits a gnarled tree root that rises up out of the ground. The cane is stuck in the root and its handle slams painfully into the my hip bone. I let out a groan and wince from the sudden jab of pain. I hear my mother inhale sharply in response to this, and know she is frustrated again by the surroundings and the difficulty we are both experiencing.
The Mother: I see my daughter tripping along the rock, rooted, dusty path down to the lakefront. Last night I was in tears in our cabin at camp. I was sweaty, sticky with bug repellant, and tired from the numerous trips to our cabin from the car full of our sleeping bags, pillows, baggage and more. I didn't have a daughter who could carry her own things, so I needed to carry both of our belongings myself.

I was hurt by the "looks" at my daughter from these new peers who did not know her. The looks communicated fear from some and pity from others. None of these felt good to my heart, and I heard the rush of fear rumbling through my head as I experienced a feeling of rejection that I had not known in several years.

Now, the next morning, we are trekking down to the lakefront ahead of the rush of kids in order to try to safely navigate the rocking, dusty, uncertain path straight down into...what? For what? I feel my daughter stumble and my shoulder burns with pain as I squeeze my right hand around her wrist and strain to help her stay on her feet. I take in a sharp breath to try to lessen the intensity of my pain and keep my eyes from tearing up.

Continue reading on Comfort in the Midst of Chaos...

The Divine Call of Dignity ~ Guest Blogging Day

Photo Courtesy of grandfailure/freedigitalphotos.net

When he arrived at the house of Jairus, he did not let anyone go in with him except Peter, John and James, and the child’s father and mother. Meanwhile, all the people were wailing and mourning for her. “Stop wailing,” Jesus said. “She is not dead but asleep.”

They laughed at him, knowing that she was dead. But he took her by the hand and said, “My child, get up!” Her spirit returned, and at once she stood up. Then Jesus told them to give her something to eat. Her parents were astonished, but he ordered them not to tell anyone what had happened.

~ Luke 8:51-56, NIV ~

There is so much to the two stories captured in Luke 8: 40-56.  (I just listened to a sermon on this passage at church this past week, and was completely absorbed in the message.)  We learn about a woman being healed, and a girl being raised from the dead in this very short, concise part of scripture.   

But, these stories didn't speak to me because of the healing or the resurrection...they spoke to me because of what they reveal about the nature of God; that He places a priority on the DIGNITY of each individual, and that He takes into consideration the PLACE that people hold in society. 

HOW ARE WE VALUED IN SOCIETY? 

Continue reading on Comfort in the Midst of Chaos...

Well...I Hadn't Planned on That...~Guest Blogging Day

To humans belong the plans of the heart,

but from the Lord comes the proper answer of the tongue.

All a person’s ways seem pure to them,

but motives are weighed by the Lord.

Commit to the Lord whatever you do,

and he will establish your plans.

Proverbs 16:1-3 NIV

Last year our daughter reveled in the glory of watching the K-Love Fan Awards on TV. We had streamed it through our Apple TV and it was a thrilling experience for her. Considering the fact that she doesn't even like watching MOVIES because they run so long, her staying put long enough to watch an award show for 3-4 hours was a miracle.


This year, we had planned to do the same thing. She had even suggested we use TV trays to eat dinner in the family room while we watched. We were ready for an "easy" night...
A.K.A. TV was going to entertain her, and I was likely going to fall asleep.
My husband, fortunately, realized a couple hours before show time that it was NOT going to be streaming live aside from on the radio station.

Uh-oh. 

Continue reading on Comfort in the Midst of Chaos...

While I was at the Funeral for My Old Dreams

it was spelled out in black and white...
there was a difference in her DNA...
this would not be a "normal" life for our first and only child...

our life was now a query and a question mark rather than an exclamation with a point.

while i was at the funeral for my old dreams,
jesus came and sheltered me
with loving eyes and gentle hands,
with peaceful breaths and merciful words.

while i was at the funeral for my old dreams,
i slowly realized the new,
dreams don't always come true,
but god's unfolding promises do.

while i was at the funeral for my old dreams,
i knew that he'd designed this beautiful journey,
it would not look like my plan,
my plan was now under the earth, and somehow that didn't hurt.

while i was at the funeral for my old dreams,
i began to smile...one day,
after a while,
i settled into today and suddenly we are miles away from the graveyard where we left the old dreams.

those old dreams do not fit us now anyway...

The Gift of Healing ~ A Gift for All? ~ Guest Blogging Day

When Jesus had called the Twelve together,

he gave them the power and authority to drive out all demons

and to cure diseases, 

and he sent them out to proclaim the kingdom of God 

and to heal the sick... Luke 9:1-2 NIV

There it is. Jesus sending out his disciples to proclaim the Kingdom and to heal the sick.

This was not long after he had first chosen his disciples either. They were still pretty rough around the edges.

But, do WE still have the power to heal? Is that just an old "gift" from the days when Jesus was walking the earth and after his death and resurrection to try to garner more followers?I believe we DO still have the power to heal, and I believe we DO all get called to that privilege as disciples of Christ.

Call me a Jesus Freak...but, I do.Back in 2004, my daughter wasn't even 6 months old and she was lying on a table waiting for her second eye surgery. She has glaucoma, and it was roaring like a lion from the time she was just a newborn.

I had my journal with me that day and had started to "prayer journal" the minute the team took her back to put her under. Here is what I wrote:

Continue Reading on Comfort in the Midst of Chaos...

I Didn't Find What I was Looking For ~ Guest Blogging Day

“The Spirit of the Lord is on me, because he has anointed me to proclaim good news to the poor.  He has sent me to proclaim freedom for the prisoners and recovery of sight for the blind, to set the oppressed free, to proclaim the year of the Lord’s favor.”  Luke 4:18-19 NIV

A couple of weeks ago this passage in Luke piqued my interest in a sermon at church.  It really struck me because, well, my daughter is blind. 

Now, I’ve read plenty of the stories about the blind being healed in scripture, and that has never bothered me.  I’ve never thought, “Why would God heal one blind person here and another here, but not my daughter?”  I already knew that the answer would be, “He has a different purpose for her, and that does not include being healed at this time.”  

But, this particular verse stood out to me as peculiar because it seemed like a type of mission statement for Jesus, yet it seemed quite limited to me in the use of the word BLIND.

Why not say he would heal lepers, raise the dead, and cast out demons?

Continue Reading on Comfort in the Midst of Chaos... 

Gotta Be Flexible... Guest Blogging Day

Rejoice always, pray continually, 

give thanks in all circumstances; 

for this is God’s will for 

you in Christ Jesus. 

1 Thessalonians 5:16-18 NIV

If there's one thing I've learned about being the parent of a child with special needs, it's that I have to be flexible.  Sure, all parents require a  level of flexibility, but I think, especially when your child has an anxiety disorder, you need to be ready to make your current situation "work" to minimize the impact of stressful situations on your child. 

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Thank you for SHOUTING!!!

Being her fun, flashy self...

This is the genealogy of Jesus the Messiah  the son of David, the son of Abraham:

Abraham was the father of Isaac,

Isaac the father of Jacob,

Jacob the father of Judah and his brothers,

Judah the father of Perez and Zerah, whose mother was Tamar,

Perez the father of Hezron,

Hezron the father of Ram,

Ram the father of Amminadab,

Amminadab the father of Nahshon,

Nahshon the father of Salmon,

Salmon the father of Boaz, whose mother was Rahab,

Boaz the father of Obed, whose mother was Ruth,

Obed the father of Jesse,

 and Jesse the father of King David.

Matthew 1: 1-6 NIV

I could have gone on here and inserted the genealogy of Christ, after all, God did...and quite honestly, I'm not doing the genealogy any justice by eliminating some of it. 

However, my story today isn't about the genealogy of Christ; it's about the importance of a name.

Sunday, we walked into our church in anticipation of having to locate a friend with whom our daughter could go to the Middle School worship service.  We attend a large church, a mega-church, if you will; so this was going to be difficult. 

However, the minute we walked into church I started to hear shouting coming from the loft area above the foyer:  Evie!  Evie!  Evie!!!

I said, "Evie, someone's calling your name." 

Her smile spread as wide as her face and her eyes twinkled.  She has this little happy "shiver" that runs through her body when she sees her friends...she shivered in delight upon hearing her name being shouted out from the loft.

Yes, a friend of hers had sought HER out and had called HER name.

Do you know what that means to the parent of a child with special needs?  Do you know what it means to the child?

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